This Is What I Wish I Could Tell My Son's Caregivers

My son, BJ, has cerebral palsy and is a happy, energetic teen. We have had some amazing people working with BJ, but there have been times that I’ve struggled and felt misunderstood as a parent. Sometimes it’s hard to have other people involved in your goals when you have a family member with a disability.

I understand staff have time constraints, funding issues and other obstacles in their day, which means it’s hard, despite their best efforts, to meet parent’s requests at times. I just would’ve liked some of them to stop and think about the greater picture we’re trying to achieve with our requests.

I wish I had written this to some of the people who worked with BJ throughout the years.

Dear Carer, Teacher, Support Worker,

I wanted to write to you because I feel there has been a misunderstanding. You see, as the mother of a son with a disability, I want the best for him. This is often mistaken for being demanding and I am sure, on occasion, difficult. If you have a son, daughter, parent or loved one, I imagine you want the best for them. It is what we all want for the people we love. We are protective and sensitive about the people we care for. It is what loving someone is all about.

It may seem I expect a lot of you, but what you don’t know is how hard I am on myself. As a parent, I never feel I am doing enough. We have spent a long time helping our son gain the skills he now has. Milestones have taken lots of work on his part and lots of determination from everyone involved in his life. He sat just before his second birthday, learned to bottom shuffle at 3 and spent his first five years doing intensive therapy. I know that we are lucky. Not everyone has the progress that he has experienced and we celebrate every one of these achievements.

The things I ask you to do are usually to help him maintain the skills we have spent years helping him learn. These often give him independence or mobility, which ultimately will benefit everyone – including you, his carer. Being able to bare weight, take steps and shift his weight will make transfers easier for you and give him a sense of accomplishment. Using his communication book at meal times allows him the opportunity to learn he has choices and can give you information. Using his walking frame will build muscle, keep him healthy and maintain mobility. It gives him a break from sitting in the same position all day in a chair. I am sure you enjoy moving and changing position throughout the day, too.

As a parent, I crave communication with my child, to know what he has done during the day. But because he is nonverbal, I am often dependent on you to share information to bridge the void. This is something I highly value. As humans, so much of our relationships with partners, family and friends is dependent on communication. I just ask you to remember this and realize that the snippets about his day you provide are a window into his life when he isn’t with me.

I often agonize over whether to say something or to keep quiet. I hope that you remember the praise and compliments I give in between and don’t focus on the times I say I’d like things to be done differently. I am so appreciative of the many people who care for my son. Over the years, so many of you have made his days happier, more fulfilling by being a part of his life, and I thank you for your dedication. You have contributed to his gains and shown patience and kindness. You’ve made my day by sharing a new skill he has learned, a funny story or a touching moment.

I want my son to be an active participant in this great big world, to feel valued, be well cared for and to continue to learn and grow. It isn’t about just filling his days or passing the time.

Everyone wants to be a contributing member of society and my son has a great desire to be in on everything going.

Thank you for all that you do and remember that I just want the best for my loved one.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Julie Jones is the creator of Have Wheelchair Will Travel (www.havewheelchairwilltravel.net), where she combines her skills as an ex travel consultant with her life and experiences as a mother to her son, BJ, who has cerebral palsy. Julie likes to share positive, can-do stories to encourage other families on a similar journey.